Support Group Stuck: Living with multiple complex cconditions

I was very intrigued by your post, it’s truly quite unique, you’re without a doubt a very intelligent individual. I’m thinking that perhaps groups are not the best choice for you unless of course you’re enjoying the help that you provide for others, there’s a wealth of rewards and gratification in doing so, this could also be helpful for your own personal needs. If you had chosen this path for your livelihood you might have found it less gratifying, it’s hard to say, in my own limited experience I would say that if this isn’t what you want then maybe a one on one therapy session is better for your mental and physical well being, this is just my thought and I hope that it helps you to find your best options.

@fraaron, like @frouke, I read your post with great interest. I want to first clarify. Are you talking about scheduled online support groups where you meet with people by video?

From your profile, I read that you live with:
Liver Transplant, Total Colectomy (Ileostomy), Total Proctectomy, Ulcerative Colitis, Autoimmune Hepatitis (AIH), Primary Sclerosing Cholangitis (PSC), Thyroid Disease (Hashimoto’s)

As a moderator, I am able to add your discussion to the related forums, such as Autoimmune Diseases, Liver Diseases, Ostomy and Transplants as well as Just Want to Talk.

Are there members here on Mayo Clinic Connect that have the same multiple conditions? Maybe. Maybe not. But I can tell that there are many members who live with multiple, complex conditions such as @rosemarya @gingerw @susanf8 and many others.

@fraaron, I'd like to learn more about your story. You mention dealing with mental health and living with complex conditions. What helps you take care of your mental health? What challenges are you dealing with?

As people age, they often have at least a few health issues, and some have many in very different body systems…some combos are more common like diabetes and heart trouble, or osteoporosis and kidney problems, just to name a few. It is a balancing act, and i discover helpful elements on Mayo Connect, so I have better questions for doctors and so I have the courage to ask those questions in better ways !

I also found your post to be honest and open, interesting and I also feel sad as I know that it is so difficult to have your life turned upside down at a young age. I am in my 50's and was in the best shape of my life and also sober for the first time since adolescence. I can not say I understand everything that you are dealing with physically. I do have Long COVID (which I believe to be an autoimmune disease) and I do not know how it is affecting my organs. I know it affects my brain, joints, kidneys, and inflammation is underneath it all. You mentioned that you are the "special" one at the groups you attend and share last. I want to tell you that your share, here, has helped me. It has helped me realize that I am not alone. Joining in these groups on Mayo's site has helped me feel not as isolated, not judged, also the realization that there are others that deal with much worse on a daily basis and yet they carry on and share. That helps me. I am pretty sure it helps others on here as well. I do go to therapy and have for 6 years now. I started after I got sober. I know that living in the present helps my mind stop spinning. An asteroid could hit the planet, tonight, and blow us all away. That may sound extreme, but thinking that way helps me try and remain present. My mind tends to catastrophize and I have no idea what the future holds. Anyway, did not mean to ramble. Thank you so much for sharing here. I look forward to hearing more about you.

Following cause same.

I have several health issues too..I have experienced what you describe. My groups are or have been online. For me now mayo myptsd and some groups on reddit.

@fraaron I understand that "stuck" feeling. I don't really have the complex medical issues you have, but I have been the "special one" with a unique experience. There is nothing like having your very experienced doctor say "hmmm... I've never seen that before" or finding out you were the subject of an "interesting case" presentation.

At this point I'm one of the most experienced people in the ostomy group, I answer a lot of questions. I had my colectomy when I was 25. It was 1987 and support groups were in person. No one was anywhere near my age. It was quite lonely. I found online support groups in the late 1990s, and that helped a lot because there were more people who had gone through what I had. But its rare that I find someone that has had as long an experience as I've had.

I have found support from people who have completely unrelated conditions - I had a friend with Cystic Fibrosis. We had no overlap in medical conditions, and we could listen to each other without feeling like we needed to do more than that. I don't know how you find a group for complex patients but I hope you can encounter one or two people you can share with.

Thank you, everyone, for your encouraging responses. It is nice to know I am not the only one who has experienced this feeling.

@frouke You are quite right. It is a joy to be able to take my own experience and assist others on their journey.

@susanf8 I have usually had excellent practitioners, perhaps because of their willingness to admit they practice at the intersection of the Art and Science of medicine! Years at research and teaching hospitals have acquainted me with an endless stream of inquisitive students and professors at every level, including the endearing but occasionally worrying personnel at my rural, local hospital to whom I am usually explaining conditions, practices, and medications while waiting for transfer.

@colleenyoung Please cross-post as you find appropriate. And yes, I have found only online support groups. It seems COVID finished any face to face meetings of any kind in my area.

Regarding my larger story, I was diagnosed with Ulcerative Colitis at 18, in my first semester of college. Other diagnoses would follow, although we suspect they were always there. As to mental health, I was born with Generalized Anxiety Disorder, and realized in my early 20s that constant anxiety and panic attacks were not everyone’s daily lot and finally sought treatment. I’ve remained close to mental health since then, and picked up closer therapy four years ago once everything started falling apart with the AIH/PSC and UC/Stoma. I sought inpatient treatment for severe anxiety/depression after a brutal infection/sepsis and three-month hospitalization. The staff and program was wonderful (as was the stoma nurse at that facility). Today I continue therapy and work to raise the visibility of mental health and less-visible medical challenges/disabilities. I’m also an ordained Anglican priest, and mental health in the clergy is an old taboo. Just showing up to our local mental health center in a collar used to cause a bit of a stir.

Again, thank you everyone for your encouraging responses.

@fraaron I was thinking of you. How are you doing today?

For no especially good reason, except he gives me a lot of comfort, here is a picture of my cat.

I play in a game, LARP, "Live Adventure Role Playing" and the A also stands for Action. The first versions were based on the table game "Dungeons and Dragons" (D&D). Today three groups play slightly different versions: Group one first used blunt swords but soon switched to wooden and then form. their customs are probably the most elaborate and they have complex rules for battle and interaction; Group two is most like D&D with a lot of rules and every battle has a Battle Judge who awards hit points during the fight with form swords and weapons; Group three is more improv with two rules, Play Nice and No One Gets Hurt. I am a group three player. One of the games I attended was in Poland at a Castle. Usually the games start on Friday night and end on Saturday night with pack up and breakfast on Sunday morning. This Game started on Thursday and went through Sunday Morning. The reason I am posting this on this discussion is that the group in Poland had asked the previous year's players to write a two page summary of their experiences. The group published these summaries as well as other info for a five hundred page book (both paper and as a PDF) One of the players had a different kind of experience. She was a lead programmer for a company who wrote application programs for customers. About six months before the game she attended, her boss was showing a customer around and introducing the client to the programmers. When he got to her, he introduced her to the client and said, "She will be the lead programmer and right now she is working on two projects. She should be ready to start yours in about a month."
As soon as her boss returned, she went to him and asked, what is my other project? I'm only working on one. He replied, I was going to tell you about it on Monday, but now is okay. She had expected the current project to take one more week. She realized she was behind schedule on the second project and started having anxiety attacks. Meantime she had also bought a ticket to the game in Poland and a plane ticket as well. About a month before the game, her anxiety attacks were bad enough to put her in the hospital. Finally she told the doctors, that she would be going home the next week because of her commitments. As she was packing to leave home for the game, she was studying/reviewing her character for the game. She had a mild attack and then realized that her character didn't have anxiety attacks and she dove into becoming that character. During the entire game, she had no problems. After the game ended, she was packing to go home and becoming herself, she had another attack.

My point is that you can change your state of mind deliberately. You can get out of depression by doing something deliberate to yourself. I look in a mirror and smile. I try to keep the smile throughout the day. People smile back at you! Which makes me smile harder. This got me out of depression. "Smile, it will only hurt a little bit!"